NYLI Alumni: The Next Generation of Bleeding Disorders Leaders

Since it formally began in 2002, the National Youth Leadership Institute (NYLI) at the National Hemophilia Foundation (NHF) has seen an impressive cadre of committed young people come through its ranks. Each one made a three-year commitment to the program, which provides 18- to 24-year-olds with a bleeding disorder, or who have a sibling with one, leadership opportunities to “encourage personal growth, effect change and positively influence others.”

NYLI participants not only enhance their involvement with NHF and local chapters, they gain a variety of advocacy and leadership skills. What lasting impacts does the program have on those who take part? We caught up with four NYLI alumni to find out how the skills they learned and the experiences they had in the program helped mold them into professionals, activists, advocates and leaders.

Leslie Ferber

Working and volunteering in the bleeding disorders community
NYLI: 2005 to 2008

I decided to go back to school because of NYLI. You don’t have to be a doctor to make a difference in people’s health.

Hardly a day goes by when Leslie Ferber doesn’t think about the bleeding disorders community. At work, she’s the community relations and education manager for a pharmaceutical company that makes factor replacement products. After hours, she’s involved with the Hemophilia Foundation of Northern California, where she’s co-chair of the teen program BLeaders. Her NYLI experience more than a decade ago inspired her to earn a master’s degree in public health and stay closely involved with the bleeding disorders community.

“It was because of NYLI that I decided to go back to school,” says Ferber, 30, a hemophilia A carrier from Newark, California. “I always felt like you don’t have to be a doctor to make a difference in people’s health.”

At her job, she facilitates educational programming related to the psychosocial issues of bleeding disorders. “I’m a firm believer that there’s a difference between health education and health promotion,” Ferber says. “I’m focused on health promotion, telling people what’s better for them, but also making it fun and engaging.”

Ferber works to make leadership experiences for teens fun and engaging, too. She helps to run an annual weekend retreat for local teens that’s distinct from the chapter’s sleep-away camp where many of the teens are junior counselors.

“We recognize that they’re at work during summer camp,” Ferber says. “We wanted a program where they’re still able to build their own leadership skills. It’s allowing them to be teens and train their current skills more, rather than working 24 hours a day.”

Ferber’s current volunteer work is an extension of what she did with NYLI after joining the program in 2005. “We were always talking about ways to get teens more involved,” Ferber says. “One of the most memorable things we did was a teen retreat. We flew in 50 youths from all over the country to Texas for a weekend. Those were some of the best times. We were camp counselors, and we were mentors.”

Carson Ouellette

Branching out and charting new territory
NYLI: 2013 to 2016

My involvement with NYLI helped get me my first job. The staff looked highly upon me because I was on the NHF board.

When Carson Ouellette joined NYLI during college, he took courses at school to learn more about nonprofit development. “I learned how the local chapters are run, how a good nonprofit is run well,” says Ouellette, 25, who lives in Moorhead, Minnesota, which borders Fargo, North Dakota.

Ouellette then used his knowledge to found a new NHF chapter: Bleeding Disorder Alliance of North Dakota. He’s currently the chapter’s president. “We got our IRS tax status in 2016,” says Ouellette, who has severe hemophilia A. “Last year, we successfully applied for a grant from NHF, bringing on a full-time executive director, lifting us out of being a volunteer-run organization.”

Ouellette felt that there was a need for a bleeding disorders nonprofit in the Fargo area. “There still is the Hemophilia Foundation of Minnesota and the Dakotas, but predominantly they cover the Twin Cities,” Ouellette says. “It’s a minimum 3½-hour drive for anyone to get down there from here.”

His goal for the nonprofit is to become a presence statewide, not just in eastern North Dakota. When he isn’t volunteering his time at the chapter, Ouellette works as the western Minnesota outreach director for US Sen. Tina Smith. “I’m her eyes and ears while she’s in Washington, DC, or the Twin Cities,” he says. “And I plan events when she comes into my region.”

Ouellette got his start in politics in 2014, interning for Minnesota’s other senator, Amy Klobuchar. After that, he worked for former Minnesota Sen. Al Franken. “My involvement with NYLI helped me to get my first job, with Sen. Franken,” Ouellette says. “The staff looked very highly on the fact that I was the youth representative on the board of NHF. Serving on the board requires organization, studying materials ahead of time and being able to talk with—and not be intimidated by—people with high-level careers.”

Public office may be in Ouellette’s future. “I’m not sure where my path’s going,” he says. “I really do enjoy being on the staff side, but I’m learning so much about what it takes to be an elected official, so I would say that it’s still a possibility.”

Patrick Cordova

Finding the right balance
NYLI: 2012 to 2015

Growing up with hemophilia A in Albuquerque, New Mexico, Patrick Cordova became involved with the state NHF chapter and joined NYLI halfway through college. He moved to Chicago to attend law school and is now an attorney in the Windy City, yet he has strong ties to his home state.

“I would like to stay involved with Sangre de Oro because of my connection and history,” says Cordova, 26. “I feel I could make a bigger impact in New Mexico. It’s a much smaller community with smaller resources.”

Although he’s been less engaged with the bleeding disorders community since he began law school, Cordova traveled to New Delhi with NHF last summer to participate in a youth training partnership program between NHF and Hemophilia Federation India. “Going to India, I’m definitely staying involved and doing what I can,” Cordova says.

As a litigation associate at a large law firm, he works on complex commercial cases for private companies and is also actively engaged in pro bono work for nonprofit organizations. “It’s my way of giving back,” he says.

Cordova says he’s glad his NYLI experience taught him how nonprofits are run, because he expects the lessons he learned will serve him well in the future. Looking ahead, he expects to become more deeply engaged with NHF, possibly in a different capacity than before.

“A lot of executives work with nonprofits or sit on the boards of nonprofits,” Cordova says. “You never know.”

Shelly Reed

Enhancing social media
NYLI: 2004 to 2009

The majority of the skills that I use come from NYLI: public speaking, advocacy and interacting with different audiences.

One of the earliest NYLI members, Shelly Reed of Murfreesboro, Tennessee, got involved with the program in 2004. She stayed on for five years, eventually becoming an NYLI co-chair.

“We traveled in a bus across the country, stopping at NHF chapters to talk about health education with kids and teens, to let them know that taking care of bleeding disorders and their health was important,” says Reed, 32, who has von Willebrand disease type 2A. “We wanted them to think about it early. Once they transitioned to college, they were going to be more independent.”

Reed also started working with the World Federation of Hemophilia (WFH), interning for the nonprofit during college, then becoming a board member for a decade.

Reed works as the training specialist of Nissan’s social media department, where she helps employees moderate the car company’s social media channels. She also teaches social media decorum for nonprofits through WFH. “I’m always teaching other employees in the company, making sure they are doing things in accordance with the brand’s image, even on a personal page,” Reed says. “It’s the same with hemophilia organizations, being aware that what they’re posting on personal pages could be linked back to their organizations.”

Reed’s WFH social media workshops help people understand how to promote their bleeding disorders organizations online. She provides insights into what people should include or omit in their group’s social feeds. She also makes suggestions for successful fundraising campaigns via social media channels.

Reed credits her NYLI background with helping to shape her career. “The majority of the skills that I use come from NYLI: public speaking, doing presentations on advocacy, interacting with different audiences and stakeholders no matter how high up they were,” Reed says. “That increased my confidence and communication skills.”

As she prepares to step down from the WFH board, she’s figuring out what her next volunteer roles will be, but she expects to remain an integral part of the bleeding disorders community. “I’m always open to volunteering with NHF and WFH,” Reed says. “I’m not really sure what might arrive in the future, but I’m open to different presentations and speaking engagements.”